I recently went back to the doctors in an attempt to sort my endo related issues, was put on a pill to help reduce flow, symptoms. I ended up 7hours in a&e and passed my endometrium. I was in so much pain & was beyond shocked to see I’ve passed grey matter the size of the palm of my hand! None of the initial doctors knew what it was, kept asking if I was pregnant! As a virgin this was laughable but frustrating as this clearly wasn’t the case. Since I’ve had a scan however yet to await results. I’m anxious they’ll suggest coil or ask me what i actually want from my doctors appointment soon. I just want to understand why and how bad this is getting because I cannot live like this. I’m almost 23 and refuse to let it keep ruining my life.
Has anyone got any advice on what I should now ask the doctor to help me with, pills do not seem to work.
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chocandcheese01
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Hi, I've recently been started on the injection to stop my periods for symptom relief and my periods have only gotten worse. I also passed that strange tissue and it was the second worst pain I've felt in my life (a ruptured ovarian cyst being the first).
Also a virgin and repeatedly asked if I was just having a miscarriage (hate the word just, their words not mine).
I think I'm going to end up with a coil i don't want.
If the pill isn't working for you, could you try the injection? It may work better for your body.
Sorry to hear that I completely understand your pain. I never knew injections could be a possibility I will definitely discuss this with the doctor. I’m dreading the thought of the coil, did you experience any side effects with the injections?
I've had 2 so far and my periods have gotten longer and heavier (which increases the pain) but as with all the methods I've been told to give it more time. My GP gave me extra progesterone tablets during the long periods to stop them.
It's 1 injection every 3 moths and it's the same hormone that's in the pill and the coil. They just don't like offering it because it's more expensive.
Definitely worth an ask though, I'm gonna give it another injection before subbmitting to the coil.
Hi chocandcheese01.Enountered the same excruciating experience. Passed large tissue matter with large lumps of blood. A&E doctors and even Gyne triage doctors have no clue and cannot explain except for miscarriage which is totally impossible. Was pushed to take 1000mg paracetamol and sent home.
My symptoms were getting persistent and I am confined to the tub unable to move anymore.
Phoned a gyne/endocrinologist friend based overseas and was advised to ask for tranexamic acid for the heavy bleeding then suggested to ask for Decapeptyl or Lupron whichever is available (28day GNRH injection for 3 mos only and progesterone only pill - Dienogest after) and not go for the coil due to issues of finding consultants to remove it when side effects take over and side effects which are hard to correct because it is hard to have the coil removed than placed given my situation. But on different circumstances can be considered. Just not during my emergency caseat that time. (I never went nor want to go for the coil though.)
So without a choice since my symptoms are worsening, went back to gyne triage and was only given new sets of pain relievers so I asked if I can go the treatment route my friend who is a known endometriosis advocate in her country suggested. The attending doctor agreed and the situation was controlled.
I am in my early 50s and the endo symptoms are still there and worse than crippling most times so it will still be a long journey for you. After that incident, I was sent some case studies by my friend that the pill cerazette that I was on caused desigual cast cases when taken for a long time that my consulting Gynes may not be aware of or are simply ignoring as other treatments are a bit pricey. Or probably because the desigual cast, she said is a way for the body to heal itself by shedding and can happen once or twice on rare cases so far.
GNRH injection 28 days dose was advised so I can easily manage the side effects like hypertension etc. Meds are not one size fits all so it is still better to be in tuned with your body and be reactive as needed.
Let us be an active advocate of our own body as noone can know what is happening than ourselves.
Also a good Gyne is like winning a lottery. I hope you have a good one or find a good one that considers your situation best.
Hi, I'm sorry to hear you had to experience this! I also passed a decidual cast a few weeks after going on a progesterone only pill. I've given birth twice and I can tell you it felt like the early stages of labour! And it was very distressing to see what came out 😳 I learnt that it's very rare for this to happen again. So, I decided to stick with the pills and give it more time. 14 months later it's worked out well for me. The pills have managed my pain and bleeding and no more decidual cast! From what I've learnt, it can take time for our bodies to adjust to whatever medication we decide. Try your best not to get disheartened, I'm sure you will get the medication right for you. Give it time, be patient and remember the odds of you experiencing that cast again are small. Lots of love and blessings to you on your healing journey. Kelly 💞 Xxx
It maybe the grey matter was blood because of the reduction in flow by the Pill you were given.With Endo generally the flow every mth is high and heavy. Mine was 10days every mth with large clots and 3 of those days were so heavy changing towels with tampons every 1hr to stop flooding onto clothes. Night time occasions waking up covered in blood. Because of pain some nights without sleep. I would lay in a hot full bath all night and keep topping it up to get relief.
As you say you are a virgin but orgasms/sex can relieve blood backup during a period or milder pain.
The coil was a no go for me. Some woman manage it, others get worse so it's removed.
Taking the PILL constantly may improve it.
For me I stayed on steriods for a few yrs but then it damaged my Pancreas. I went on to Zoladex mthly then 3mthly. Told several mths to get use to it. The are several more new drugs available.
I use different painkillers, sometimes they work sometimes changing them on different days works better. Ponstan 40 helped more than most. When all fails I use Belladonna and Fennel Tea some small health foods shops sell and availed online for cramps.
My TENs Machine certainly bought in Boots but many avaliable online. Mine has the 4 electros. Try placing on sides of hips away from pain areas to gate the pelvis from the signals to the brain. I use the backpain setting but your body maybe different. Set at 3 perhaps so brain senses it for 3mins then turn to 2 perhaps we'll to a tickle within 5 to 10mins the pain should come down.
Regular bowel movements are important, myself in those early yrs I would hold back cos of pain.
Learning ways to generally relax.
Seeing a Doctor or Gynae perhaps but a Endometriosis Specialist is what you need. There are Endometriosis Clinics. Mine in Hammersmith. Find out online where you want to go and tell your doctor that's where you want your Referral. They are under NHS Rules to comply. Also some Hostipals have Pain Clinics with other help available.
My goodness you went through a terrible terrible time of it and only at 23 yrs ! However I'm glad to hear your fighting spirit & wish you the very best
Hey there, so sorry you’re going through this. Decidual casts are no fun - I passed one after starting on a new pill and taking it back-to-back, which my body clearly didn’t like.
I completely hear you on not wanting the coil, I’ve never had one either but this has made me more determined to find a pill that works for me. For years, I was convinced that I simply couldn’t handle the hormones in the pill, but actually it was about finding the right combination.
The first thing it’s important to know - most GPs and gynaes know very little about the pill and the options available. Your best option is to see a specialist women’s health GP. Some NHS GP practices have these in-house, otherwise you can see one privately. I saw a GP online through The Lowdown website. It cost me £65 but has truly transformed my endometriosis symptoms, so was well worth it.
The second thing to know - generally speaking, body-identical oestrogen is better tolerated by the body than synthetic oestrogen. Most of the pills prescribed by the NHS as standard contain synthetic oestrogen, because it’s cheaper. Pills containing body-identical oestrogen are newer and more expensive. I take Qlaira, which has got my symptoms much more under control. You may struggle to get a newer pill like Qlaira prescribed on the NHS because it’s more expensive (sad, but true how little women are valued). But you can buy it privately if you need to, for example from Superdrug.
It still may take a bit of patience and trial and error to find the right pill for you, and it may take months to see real improvements - I’m 10 months on Qlaira and still seeing improvements. But also, if a pill doesn’t feel right to you, don’t feel you have to stick it out - you know your body best.
Finally, a couple of books about the pill and hormones that I’ve found really useful:
How The Pill Changes Everything by Dr Sarah E Hill
Everything You Need to Know About the Pill But Were too Afraid to Ask by Kate Muir
Good luck finding something that works for you. And please don’t feel pressured into having the coil - there are many other things you can try. xx
I passed one 6 months after surgery (no idea if there’s a link) the next month period was back to ‘normal’ so waiting to see if it happens again. But oh my goodness. The feeling of passing it was just something else. I didn’t know what it was at the time, it was only that I had a follow up appointment with my consultant a few weeks later and told him. The feeling at the time was awful - the pain, the feeling of passing it, I felt really weak and headachey after and I don’t know if that was part of it or the stress of not knowing what was going on.
The pain is unbearable, beyond unable to explain! Hope you got the answers you deserved in the end, I’m in the same position right now where I just need some sort of explanation for all of this!
I have at least got the reassurance of what it is which is a start. I also am a virgin so that took the ‘easy’ answer of pregnancy/ miscarriage out (I do not mean that either of those things are easy - just that it would have been the simple explanation) but it means it took longer to find out what was going on, so that was scary. But I don’t feel like I have any answers for what to do about it. So waiting to see if it happens again. Because there’s no way I could carry on with life as normal when it happened so if it’s going to be a regular thing I’m going to need some help managing these symptoms. Hope you get some answers/ relief.
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